Prostatepedia spoke with two members of their team, Mr. Dan Klein and Ms. Amy Niles, about their services for prostate cancer patients.

What does PAN do?

Mr. Klein: PAN’s mission is to help people with life-threatening, chronic, and rare diseases get access to their critical medications and also to advocate on their behalf.

Primarily we provide copay assistance to patients and help them cover the out-of-pocket costs of their prescription medications. We also help with insurance premiums and travel expenses.

We have about 60 different disease areas where we provide assistance to patients. In most of those, we only provide copay assistance, but in a small number of those areas—including prostate cancer—we also provide travel assistance. In some instances, we provide assistance with premiums.

We are a fairly large-scale organization. We help several hundred thousand people a year, and we provide many hundreds of millions of dollars in financial assistance a year. There are many people who need help, the need is growing, and we expect it to continue to grow. By that, I mean more and more people struggle with covering the out-of-pocket costs of their care.

We focus on people with income between 200% and 400% of the federal poverty level. That’s sort of our sweet spot if you will. We focus largely on people on Medicare because, under the regulatory rules, people on Medicare can only get assistance of this kind from independent charities like the PAN Foundation. They’re not able to get help directly from drug manufacturers.

You’re making a distinction between the uninsured versus the underinsured. Does “underinsured” refer to patients who have health insurance that does not cover all of their expenses?

Mr. Klein: Right. We really are organized around helping the underinsured. Within Medicare programs, and Medicare Part D particularly, many people are underinsured because of the high out-of-pocket costs. In Medicare, there’s an infamous donut hole, or coverage gap, that people have to get through. Once they’re through, they still have to pay 5% of the cost of their medication with no out-of-pocket limit. If they take an expensive specialty medication—and many people with prostate cancer take expensive medications—it can easily cost $10,000 a year out-of-pocket just for a single drug.

And you also help with travel?

Mr. Klein: We do. We have a travel fund for people with metastatic prostate cancer. In particular, people who may live far from a treatment center sometimes struggle to afford to get to the specialized care that they need. The travel fund will pick up those expenses related to travel. It could be livery services. It could be the hotel expenses, and we’ll help with those.

What other kinds of out-of-pocket expenses do prostate cancer patients face?

Mr. Klein: There are all sorts of out-of-pocket expenses, and people tend to forget about the fact that it’s not just the copays and deductibles related to the medications. There can also be out-of-pocket expenses related to their medical care or to hospitalization.

How can patients apply to benefit from your programs? What’s the process like?

Mr. Klein: It’s a very streamlined process. Patients can enroll in multiple ways. They can come to our website and enroll through the patient portal, or they can call our 800 number and enroll. Many patients are enrolled by their physicians or by their pharmacists. A pharmacist or physician can enroll a patient through the portal or the call center.

It takes around 10 minutes to complete the enrollment. Within that 10 minutes, they’ll learn whether or not they’ve been approved, and if so, they can use the grant immediately to fill a prescription.

Are they one-time grants or recurring?

Mr. Klein: The grants are for a maximum amount. In the case of prostate cancer, that amount would be $7,500 a year. That’s meant to cover out-of-pocket costs for one year. We use a lot of data to help us try to set that number. Patients who need more than that can ask for a second grant in that same 12-month period. Then at the end of the 12 months, they can renew the grant, provided funding is available.

The eligibility criteria for prostate cancer are that the patient has to be at or below 500% of the federal poverty level, and they need to live in the US. It’s a Medicare-only fund, so they need to have Medicare coverage, not commercial coverage. Patients who have commercial insurance coverage can get help directly from drug manufacturers.

Are there any nonprofits who do something similar for private health insurance companies?

Mr. Klein: Charities like PAN generally provide a similar kind of assistance to patients on Medicare. The reason is that under the Anti-Kickback Statute, drug manufacturers are able to serve people who have commercial insurance, but they’re not able to serve people who have coverage through Medicare.

As an independent charity, we’re highly regulated in what we can do, and we have to keep an arm’s-length relationship from the drug manufacturers. For example, we’re required to cover all of the different medications that might be needed by a patient with prostate cancer. We cover about 35 different medications for prostate cancer.

What about people who are completely uninsured? Is anyone offering help to them?

Mr. Klein: Yes. There are several ways that those patients can get assistance. Drug manufacturers operate Patient Assistance Programs (PAPs), or free drug programs. These are designed to help people who do not have insurance and who are below a certain income threshold. It varies from manufacturer to manufacturer.

The other option is to talk to one of the patient advocacy groups that help navigate the system to find insurance coverage available through the Affordable Care Act (ACA) health exchanges or possibly through Medicaid.

Are financial issues more prevalent in patients who are newly diagnosed and starting on medications, in patients who have been through a couple rounds, or is it all over the map?

Mr. Klein: All of the above. Our particular prostate cancer funds are for people with metastatic prostate cancer. That could either be newly diagnosed patients who were diagnosed at a later stage, or it could be patients who had been diagnosed with local disease that has progressed.

With the types of treatments available today, many patients live longer and manage their disease almost like a chronic disease, and so they may need assistance with out-of-pocket costs for a number of years.

Anything else patients should know?

Ms. Niles: We are very pleased to be working with Us TOO so that patients who contact PAN for assistance can benefit from the range of services that the organization provides. Financial assistance is obviously very important, and it removes barriers to care. But patients, especially when first diagnosed, have many questions about their illness. Addressing those concerns is beyond PAN’s mission, but it’s not beyond what we want to do for patients.

We have aligned with Us TOO which helps patients have a conversation about their illness, medication adherence, and provides a range of support services.

We have close to 20 alliances with various leading patient advocacy organizations to provide this level of support for patients.

Does Medicare refer patients to you?

Mr. Klein: Medicare does. If you go to http://www.cms.gov, they have a whole page that refers people to PAN and programs like PAN.

Do you have any advice for patients who face these issues?

Mr. Klein: There is help available. Patients should not get frustrated or despondent. If a patient calls PAN and we can’t help them, we’ll try to refer them to someone who can.

Ms. Niles: I think it’s really important for patients to have conversations around cost. It’s a difficult conversation to have with their physician or the staff in his or her office. We don’t want patients to refuse treatment because of costs or do things like cut pills in half, delay treatment, or go into medical debt and bankruptcy because of the cost. They should have these conversations and know that resources exist to help them.

Why are patients hesitant to have these conversations?

Mr. Klein: Someone who’s provided for himself for most of his adult life who then gets diagnosed may feel isolated and stigmatized in terms of asking for help. For people who are older, it can feel uncomfortable. Patient advocacy groups like Us TOO and charities like PAN can help them navigate these issues as well.

I imagine there must be a lot of fear involved. Not only are you struggling to pay for your medication, but what is it going to mean for your financial future?

Mr. Klein: Healthcare cost is still one of the leading causes of personal bankruptcy in the US.

Is that more problematic among, for example, older patients who are perhaps on a fixed income?

Mr. Klein: Yes. It’s more problematic for older patients who have serious illnesses because they aren’t able to recover financially. They may not have the ability to go back to work. They may not have a lot of assets. It’s a challenge across the board.

From a public policy perspective, we’re concerned that an increasing number of people have difficulty meeting the deductibles, copays, and coinsurance. And yet, the direction that the insurance industry and the government have taken is not going to make that problem go away anytime soon. We’re worried about the current situation and even more worried about what may come in the next year or two.

What about people who would like to donate?

Mr. Klein: Like any not-for-profit, we are happy to get donations from all sources. Because of the amount of money that’s needed to support the large number of patients who need help, the drug manufacturers are our main source of support. Without their help, we wouldn’t be able to provide the number of grants that we do.